Hyperemesis: 'I couldn't move without vomiting. I couldn't sit up or go to the bathroom'

“I was walking by a gelato shop and I didn’t feel like going in. I thought ‘that’s not me — I must be pregnant’.” Already mum to a two-year-old son, while pregnant with him, she had experienced nausea and vomiting that kept her bedbound, unable to leave the house for eight weeks. She was, however, able to keep a tiny bit of food down.

Dr Fejzo describes, after his birth, feeling scared that if she got pregnant again the same thing would happen: “My doctor said every pregnancy is different.”

In fact, her second experience of hyperemesis gravidarum (HG) was worse than anything she had endured first time around. “I had extreme, non-stop nausea and vomiting, so bad I couldn’t move without vomiting. I couldn’t sit up or go to the bathroom. I had to lie flat – if I turned to my side I would vomit. So I was staring at the ceiling. It felt like torture.”

Recalling the heartbreak of not being able to hold her little son, Marko, she says: “It was very sad. I had really bonded with him of course, but now he couldn’t come in my room. I had IV fluids that he would grab and pull, and I was so sensitive to movement. So my husband would bring him in once at night just to say goodnight.”

Dr Fejzo’s parents, who had just retired, cared for her in shifts. “It wasn’t what they expected from their first months of retirement,” she recalls, adding that part of this care involved changing her bedpan. Meanwhile, her husband, Zoran, woke every night to change her meds. During this ravaging 10-week episode — which began five weeks into her pregnancy — Dr Fejzo became too weak to talk and had to use a buzzer when she needed to communicate her needs.

She received little sympathy from her doctor who told her “it was in my head and I was trying to get attention from my husband and my parents”.

At 15 weeks, she lost her baby. “When my doctor saw me, he said ‘you look like you’ve been through the wars’.”

She recalls grappling with what she had been through: “I had suffered so much, and for that to be the end of it — to lose my baby. I thought 'why all that suffering for nothing?'”

Dr Ciara McCarthy, ICGP/HSE GP Clinical Lead in Women’s Health, says many more are unable to work or perform normal daily activities: “Up to 1% of women will be hospitalised, due to severe nausea and vomiting that causes dehydration — this requires intravenous fluid replacement (a ‘drip’). While HG typically eases in the second half of pregnancy, nausea and vomiting often persist until delivery, meaning some women require multiple admissions and changes of medication to control symptoms over the course of their pregnancy.”

Dr McCarthy outlines the condition’s physical consequences, including “weight loss, dehydration, electrolyte (salt) imbalances, damage to dental enamel from vomiting, tears or ulcers in the oesophagus (food pipe) from vomiting, and dysfunction of the thyroid, kidneys and liver”.

Dr Fejzo’s liver and kidneys had been under so much stress it took her 18 months to recover physically. During that time, she continued to have “occasional extreme nausea”. When it came to the psychological impact, she says “everybody told me that as soon as I had another baby I would heal emotionally”.

Right away, she says, she looked into surrogacy. “I felt, 'well my body killed the baby, so it would be healthier for someone else to carry my baby'. And I couldn’t do it again because of the fear I felt and because I didn’t want to put my family through it.

Dr Fejzo’s twin daughters, Mila and Kala, were born through surrogacy in October 2001.

As a scientist, it was perhaps inevitable she would use that lens to understand the causes of HG. Though she had also suffered it during her first pregnancy, it was only diagnosed in her second. “Barely anything was known about it in the early 2000s. Very little research had been done. And I had so many unanswered questions,” she says, recalling how she wondered whether high levels of a drug she had been on could have caused the death of her baby. “I wondered what’s the recurrence risk, a big question for anybody who has it.”

Dr Fejzo took a genetic approach to her research. A previous twin study had suggested that HG ran in families, so she did an online survey which confirmed that, yes, it did run in families. A birthday gift from her brother of a 23andme DNA testing kit when she was 42 prompted an idea — to ask the consumer genetic testing company if they would include questions about hyperemesis in their surveys. They did, and within a few years tens of thousands of 23andme customers had answered the questions — 1,300 were found to have HG.

Dr Fejzo and her team did a genome-wide investigative study, comparing DNA from those who had HG with those who didn’t. “Two genes came up and the most significant one was GDF15 — growth differentiation factor 15.”

Until then, Dr Fejzo had never heard of this blood-borne protein. “I looked it up and found it had already, in a study, been linked to pregnancy — it turns on to produce extremely high levels in the placenta in early pregnancy. In addition, it had also been associated with cachexia in cancer patients — this has very similar symptoms to hyperemesis. To me, this was very strong evidence that GDF15 was the cause.”

Meanwhile in Britain, Professor of Clinical Biochemistry and Medicine at University of Cambridge, Stephen O’Rahilly — taking a different approach — was also coming to the conclusion that GDF15 was likely to be the main cause of HG. The two scientists are now collaborating on HG research.

Professor O’Rahilly, an Irish medical graduate from UCD, says their recent collaborative work has given them a clear picture of how GDF15 drives hyperemesis: “I am convinced that this will lead to effective ways to treat and prevent HG. The science is very robust."

But he is mindful of “obstacles to turning this science into therapy”. These, he says, “include the understandable anxieties that accompany all treatments in pregnant women, given the memory of thalidomide, and the fact that some companies see commercial challenges in developing a drug that is only used intermittently and for relatively short periods of time”.

Dr Fejzo says: “I strongly believe that, if safe, medications aimed at altering the GDF15 pathway will be a game-changer for people suffering from HG.”

Kate Middleton and American actress, Amy Schumer, are just some of the high-profile women who have suffered from HG and who have helped shine a spotlight on the condition in recent years. But notwithstanding this, Dr Fejzo says there’s still a lot of misinformation out there. She and colleagues at the HER Foundation (hyperemesis.org) were recently sent a video of a US-based female doctor teaching medical students. “She told them people hospitalised with hyperemesis usually had something going on at home and didn’t want to get better. We believe that’s what she’s continuing to teach today.”

Tina Horan, a Cork-based mum of three, whose children range in age from 18 to 24, believes she had HG during her pregnancies. “I heard someone say this happens because the woman’s body is rejecting her baby. I definitely wanted my babies!” says Tina, who works in movement and dance.

Describing herself as fit and athletic going into her pregnancies, she says: “I thought it would all be plain sailing, but I was very sick often when I was carrying my babies. I distinctly remember coming out of the house, ready for work, and vomiting into the garden. If I was in the house and didn’t think I’d make it to the bathroom, I’d vomit out the window. I’d bring a bag with me in the car if I felt I was going to throw up.”

One of her sisters, she says, “used to get sicker than I did”, and her mother got sick during her pregnancies. “It was understood [in the family] that it was something that could happen in pregnancy.”

Just as Dr Fejzo was told ‘it’s all in your head’, and just as Tina was told her body was rejecting the baby, many sufferers are peddled myths today. “Sometimes they’re told there was something they could have done. There is nothing you can do — you have a predisposition to it,” says Dr Fejzo.

This article was first published in August 2023